We also mentioned how oxalates can be a factor in vulvodynia and someone asked this question on the blog:

I just listened to the webinar talking about oxalates. I was shocked and delighted to hear the mention of the connection between high oxalates and vulvodynia. My friend has suffered with this for 18 months with little improvement. She has painful feet so I am wondering if there is indeed a connection for her situation. Could you please explain a bit more of the vulvodynia/ oxalates connection? I would like to give my friend the information.

Before I share the resources I offered her for her friend, let me share this about vulvodynia:

Vulvodynia is defined as chronic vulvar burning, stinging, rawness, soreness or pain in the absence of objective clinical or laboratory findings to explain these symptoms. Vulvodynia is a chronic pain syndrome affecting up to 18% of the female population and is generally regarded as an underdiagnosed difficult to treat gynecological disorder.

The etiology [cause] of vulvodynia is still enigmatic and is probably multifactorial-including physiological concerns (eg, pelvic floor muscle dysfunction, neuropathic pain, and psychosocial) and sexual issues (eg, anxiety and sexual dysfunction). Although it is a common syndrome, most patients are neither correctly diagnosed nor treated. A diagnosis of vulvodynia is based upon patient history and lack of physical findings upon careful examination. No clinical or histological findings are present to aid in diagnosis. Most treatment options for vulvodynia are neither well studied nor have an evidence base, relying instead upon expert opinion, care provider experience, and use of data from other pain syndromes. However, many patients show marked improvement after physical therapy for the pelvic floor, medications for neuropathic pain, and psychosexual therapy.

A diet low in oxalate salts has been suggested as a treatment for women who experience unexplained vulval pain or vulvodynia… it is widely used in the United States as a treatment for vulvodynia. The diet may be supplemented with the use of oral calcium citrate.

There are few doctors in the UK who are aware of or routinely use this treatment. Many specialist doctors who run vulval clinics in this country [the UK] are skeptical about the treatment, as much of the evidence has not been published in the medical literature and the treatment is not of proven value. A diet low in oxalate with or without calcium citrate may, however, benefit some women with vulval pain and this is certainly an option for some women to try.

The vulvar pain is often described as a “burning” or “cutting” or “sharp” kind of pain. You’ll see medications recommended for the neuropathic pain in many of the studies and on the Vulval Pain society site.

It does concern me that so many women are prescribed SSRIs and medications like gabapentin and benzodiazepines when there are the safer and more effective options of the amino acids such as tryptophan and GABA. When dosed correctly these individual amino acids help with some of the pain and anxiety right away while other root causes are addressed.

For my clients, I recommend targeted individual amino acids instead of the medications. I recommend a trial of tryptophan instead of an antidepressant, assuming they score low on the serotonin section of the amino acid questionnaire.

Research shows there is serotonin involvement with vulvodynia. In this study of women with PVD (provoked vestibulodynia i.e. pain in the entrance of the vagina, common with vulvodynia):

Polymorphism in the serotonin receptor gene, 5HT-2A, has been associated with other chronic pain disorders such as fibromyalgia…. The results [of this study] indicate a contribution of alterations in the serotonergic system to the patho-genesis of PVD and gives further evidence of PVD being a general pain disorder similar to other chronic pain disorders.

I also recommend a trial of GABA instead of gabapentin or one of the benzodiazepines, assuming they score low on the GABA section of the amino acid questionnaire.

Tryptophan and GABA can help with both the pain, and the anxiety and depression that is commonly seen with vulvodynia and other pelvic floor conditions – right away while other root causes are addressed.

Since acupuncture is often reported to be helpful, I also consider a trial of DPA for endorphin boosting and hence some pain reduction too.

Physical therapy is often extremely beneficial and frequently overlooked, so finding a good pelvic floor PT to be part of your healing team is key too.

When responding to the blog question I commented that “your friend is fortunate to have you looking out for her”. Using some or all of the above approaches I would expect her to find some relief of the vulva pain, the foot pain and experience reduced anxiety and depression (assuming these are her root causes).

Please note that this is not an exhaustive list of contributing factors for vulvoldynia – other factors could include candida, infections such as HPV, IBS/SIBO, and trauma and sexual abuse. My colleague, Jessica Drummond, nutritionist and physical therapist, and an expert on female pelvic pain, writes about immunity, dysbiosis, gluten and other food sensitivities, cortisol and sex hormone imbalances in this article: Vulvovaginal Pain and The Immune System: Practical Steps for Vulvovaginal Pain Relief. A full functional workup is required and your root cause can be different from someone else’s root cause.

I’d also like to add that although dietary oxalates cause excruciating pain in my feet, I’m so fortunate, in that I do not have vulvodynia.

Have you had success with a low oxalate diet and calcium citrate for vulvodynia? And other pain (in the feet or hips or elsewhere in the body)?

Has physical therapy with a pelvic floor specialist helped?

Have you found tryptophan, GABA or DPA to help with the pain and the anxiety and/or depression too?

Have any other treatments helped you?

If you’re a practitioner what approaches have helped your clients/patients?

Reader Interactions

Comments

I have had vulvodynia for most of my adult life. I think it is related to my anxiety, as I think I tense my muscles a lot as a result of my anxiety – including the vaginal muscles.
You wouldn’t think that tight or tense muscles could cause a stinging sensation, but I believe they can.
I also have quite bad pain on intercourse and I did get some help on that in the past with a practitioner, who used biofeedback to help me learn how to relax my vaginal muscles – so that they weren’t tense all the time. This certainly helped but was quite some time ago now so I think I may have relapsed.
I have a brilliant physiotherapist and she also believes that the vulvodynia is caused by tight muscles and is helping me with it but not much success yet.
One exercise that does seem to help is to lie on your back on a bed and hang your head over the edge of the bed so that you get a good stretch of your stomach (vertically). I think this helps to stretch the muscles in the vulva area.

Natalie
I’m sorry to hear this but glad to hear you’ve had some relief in the past and are now working with a PT. Thanks for sharing your exercise!

I’m curious if you’ve looked into any of the root causes covered in the blog post? and if any have helped?

Since you have anxiety too, if we were working together, I’d consider a trial of GABA and then tryptophan – if they are going to work you’ll notice the effects right away. And then you can start looking into the other possible root causes, some of which can take longer to resolve.

Hi Trudy
Thanks for your reply. I have been following your blogs for a while (thank you for all your information) and I have already tried GABA, in dosages of a pinch up to 750mg (under the tongue) with no effect whatsoever – not even a placebo effect! I was so hoping it would help with my anxiety.

I take a small amount of 5HTP but that doesn’t really help my anxiety much (I’m actually a really happy person so I don’t think low serotoin is the problem). I think my anxiety is genetic ( I have some of the SNPs associated with Autism). It is certainly deep-rooted, having been there since childhood.

It is an ongoing process of reading, learning and hoping to find things that help. My current journey is finding out the ramifications of the SNPs I have and whether there will be some answers there.

Natalie
Since you’ve been following my blog for awhile I’m sure you’ve read about how I do a trial and start low? (https://www.everywomanover29.com/blog/how-to-do-an-amino-acid-trial-for-anxiety/) With my clients, if it looks like low GABA is a factor I have them continue to increase the GABA until we get benefits or negative effects. I will say that 750mg is typically a high amount but I’ve had a few clients do really well with 2000mg a few times a day.

We also always consider tryptophan (and only the Lidtke brand) because some people do better on it than they do on 5-HTP. Remember low serotonin is not only a factor with depression but also with the worry, ruminations kind of anxiety.

With SNPs you do have to find out if they are actually causing issues i.e. expressing

A few more points I would add given my 17 years of experience treating vulvodynia. And, it’s a research interest of mine.
✔️ Elevated oxalic acid and other oxalate markets can be seen on Great Plains Lab and other labs’ organic acid testing.
✔️ I also commonly see interstitial cystitis in patients with elevated oxalates.
✔️ When oxalates are an issue, a low oxalate diet is just a short term solution. It’s not a healthy diet long term. Usually patients benefit from addressing hypochlorhydria, leaky gut, and gut dysbiosis to be eventually able to tolerate most high oxalate foods.
✔️ If oxalates are an issue, other food sensitivities are also common.
✔️ Great suggestions on amino acid supplementation to support neurotransmitter health in this article. Thanks Trudy!

Jessica
Thanks for the article and your wonderful experience in this area! And thanks for these additional pointers. One additional point we both agree on – even with oxalate issues you may not see elevated oxalate markers on an OAT test.

Jessica/Trudy
In support of your assertion that high oxalates may be involved in interstitial cystitis – i suffered from this condition over a lengthy period and for 6 months was on antibiotics. A urine test identified oxalates at 4 times maximum recommended levels. I was drinking a green juice (based on spinach) every morning for breakfast believing I was consuming a drink that was healthy and alkalising. I ceased the green juice and the condition resolved. I am following a Keto diet with (cooked) spinach almost every day this week (5years later) and it has returned.
What concerns me is that spinach is featured predominantly in almost every ‘healthy’ diet plan as some sort of perfect food and this is the first time I have read something confirming my experience.
Ditto green juices and I have never seen any warning that high oxalate foods such as spinach can be involved in interstitial cystitis.
It is such a misery-inducing condition and I would feel safe assuming that most people suffering from it do not know of this connection.
I just wish it would be mentioned as a possible side effect when promoting the health benefits of spinach and green juice containing it.
My life changed after eliminating spinach from my diet (until this week 🙂

That is absolutely fascinating, about your experiences with spinach, Lyn.

Someone who speaks a lot about the consequences of oxalates from “green drinks” is Donna Gates, of Body Ecology. I’m not sure if I’ve heard her connect oxalates and vulvodynia specifically, but maybe I just missed it … she has connected oxalates to many, many maladies, though.

She ALSO speaks about specific species of gut bacteria you can supplement with … the species which loves to consume oxalates, so we don’t suffer from accumulation of oxalates! It’s a solution, of sorts. Check out her website.

Pam
Yes – Donna Gates is another person who talks about this. I’m just not sure if the bacteria she speaks about actually works. As far as I’m aware the one that works is oxalobacter formigenes which is not commercially available right now. Details here https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2396938/

Just making sure you saw my comment for Lyn too

Also calcium citrate or magnesium citrate is a great antidote if too many oxalates have been consumed by accident

Lyn
Thanks for sharing. This is something I see a lot and is actually something I’m pretty vocal about when I present and here on the blog. I feel too many people are not being informed about the harm from these high oxalate foods.

Pam
Glad you enjoyed it! Thanks for sharing about Julva – so pleased to hear it’s helping. May I ask how much you use, how often and how it helps? and how quickly it started helping. I just recently heard about this product and so far I’m very impressed!

I use the Julva as directed … 1/8th teaspoon once daily on the external vulva tissues, and at/in the vaginal entrance. A tube lasts about 6 weeks.

Dr. Cabeca can better explain how it works on the chemical/hormonal level, but my understanding is that the tissues absorb the DHEA and it is strengthening/rebuilding to the tissue tone.

I began to notice diminished pain within about a week, and now, after 8 weeks I have just one tiny spot with mild pain remaining, rather than the entire vaginal entrance being VERY painful.

This cream is also helpful for female incontinence, which I also have a mild case of. Again, the DHEA is toning to tissues which affect continence.

For the same reason, it can also be helpful for hemorrhoids. My own mild case has been helped to some degree.

I understand that a different DHEA product has recently been approved by the FDA, but can’t remember the name of that right now. But, Dr. Cabeca’s product has such great ingredients, and I can’t imagine that a drug company would make such a wholesome product.

As I understand from a webinar from Dr. Cabeca she can’t say that her product can be used internally without FDA approval, although I do use it internally inside the vaginal entrance/ which is where most of the pain was. She used to have women use it internally, but I have a feeling that the FDA came down on her, unfortunately, as they are inclined to do. So now she can’t say it. The FDA approval process is prohibitive, so now she just says it is for external use … but as I said, I do use it internally. All of this I say from having followed her for a long time now, and having heard about the evolution of this product.

Hi Trudy
I’d be very interested in your review of Julva.
Maybe as part of your discussion with Dr Cabeca you could see if she has some better options for overseas purchasers. Currently it is $49.50 postage for one tube of Julva to be posted to Australia. Puts it out of my price range unfortunately. Thanks

Natalie
That is a lot – have you considered finding 4 friends and doing one shipment? Hopefully she’s considering distribution here but it may take awhile to get the approvals. It may be better to find something locally. I’ll report back if I find something

Thanks Trudy
DHEA is ‘prescription only’ in Australia. If you have a prescription then you can get it from a compounding chemist, and they would definitely be able to make a cream for you, however I think it is quite expensive. I used to get DHEA capsules from a compounding pharmacy quite some time ago, so I’m not sure of the current prices.

I suspect the Aus government would not aprove Julva, but even if they did it would be prescription only.

Pam
Thanks for sharing this. I haven’t been able to find the research paper they refer to or much on Mike Riepl but did find this study: A low dose (6.5 mg) of intravaginal DHEA permits a strictly local action while maintaining all serum estrogens or androgens as well as their metabolites within normal values https://www.ncbi.nlm.nih.gov/pubmed/27997350 and this one: Intravaginal prasterone (DHEA) provides local action without clinically significant changes in serum concentrations of estrogens or androgens https://www.ncbi.nlm.nih.gov/pubmed/23954500

Interestingly, both those studies were done using prasterone which as far as I can see is a synthetic form of DHEA. It is always sad when a ‘drug’ has to be created rather than using the bio-identical hormone, just so that some company can make money out of it. At least Julva is using bio-identical DHEA (well it seems that way but that would be a good question to ask Dr Cabeca – also her opinion of prasterone Vs DHEA)

Natalie
Thanks! I read the studies very quickly and didn’t notice that! I would always opt for bio-identical and would love to see some research on bio-identical DHEA for this use. I’ll be sure to ask Dr. Cabeca about this and prasterone.

Thanks for the patent link. It’s rather disappointing to see squalene and parabens and even vitamin E (due to gluten issues?) in the Riepl product but I don’t see any of this in Julva so that’s great.

I’m also curious if Julva uses a similar “bioadhesive controlled release” mechanism? Another question for Dr. Cabeca

Dr. Anna
Thanks for stopping by! Yes these results are amazing aren’t they and I see plenty more on your site! Thanks for these very helpful links. I see you reference a number of studies on Prasteron. I’d love to hear your thoughts on this synthetic version of DHEA vs bioidentical DHEA and find out if there are any similar studies on bioidentical DHEA?

Hi Trudy and Dr Anna
Thanks so much for this blog! I am looking for an answer to my 19-year-old autistic daughter’s rather mysterious symptoms and I think I am getting closer to some . She has completely stopped having a menstrual cycle for about a year, but for a while now, at least once or twice a month, she goes through 3 or 4 days of bladder incontinence and recently also bowel incontinence. Anxiety goes through the roof at this time. She keeps drinking water and using the rest room every few minutes and kind of bears down and strains from some discomfort she can’t really explain. She is nonverbal but can spell and tells me there is no pain but a spasm. I think she might mean urgency. It is good to know that vulvodynia has multi factorial cause as that explains a lot. She was born with a tethered cord in the lumbar region of the spine and had extensive surgery for it as an infant and may have some nerve issues as well as pelvic floor dysfunction. Oxalates have tested high on OATs and I’m pretty sure she has leaky gut and dysbiosis. I’m still trying to connect all the dots and get the whole picture so I can treat her cyclical symptoms more effectively. Wondering if Dr. Anna’s Julva cream would help. Have tried the low oxalate diet before and will try it again, but obviously it’s not just that. Would love some suggestions or input on what might be going on with my daughter.

Srimita
When I hear “kind of bears down and strains from some discomfort she can’t really explain” and “tells me there is no pain but a spasm” I think of rectal spasms (called proctalgia fugax). You mention her “anxiety goes through the roof at this time”

I personally experience the rectal spasms and through trial and error and lots of reading have found that oral sublingual GABA (held in the mouth for about 5 mins) stops the spasms very quickly. I actually take some at the first hint of a spasm when it’s a mild niggling feeling and it prevents a full spasm and is excruciating! You feel like bearing down will help but it doesn’t. The GABA would likely help the anxiety too.

I’m not aware of incontinence being a factor with this condition but will look into this as I am gathering information for a blog post on the topic because it’s way more common than we realize.

There are often many root causes and it’s always prudent to try and address everything since they are often inter-related – like the candida, leaky gut, dysbiois, oxalates etc. So yes with the possible nerve damage I would look into the Julva cream as well as working with a pelvic floor physical therapist like Jessica Drummond.

Hi Trudy, I have gout (high oxalates) and I find that when my gout symptoms flair, they bring on anxiety as well. I began taking white mulberry extract (a formula by AOR called Urica) that not only clears the discomfort of high oxalates, but makes me very calm. I feel like my anxiety is partly caused by gout (and not the other way around as it is conventionally thought). Do you think high oxalates could be a cause of anxiety? All the best.

Tricia
It’s well recognized in the oxalate community that they can contribute to anxiety. Thanks for sharing about Urica (link here for other blog readers http://www.aor.ca/en/product/urica) – interesting. Typically calcium or magnesium citrate helps with oxalate excretion but I’m not sure about gout specifically.

Hi Trudy, the Urica (white mulberry) supplement I’ve been using really calms me down so I did a bit of digging. Turns out it has been studied as an anxiolytic https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3023120/ and it helps control blood sugar, I imaging you’ve already come across this, but I thought I’d share anyway because I’m fascinated with this discovery 🙂

Tricia
Thanks for sharing – this is new to me. I see they state: “The results obtained in this study suggest that the extract of the leaves of M. alba possesses anxiolytic and muscle-relaxant activities, which is possibly mediated through the GABAA-BZD mechanism” – I agree, fascinating.

I’d love to hear why you started taking this, which product and how much helps and how quickly you noticed a calming effect?

I have gout and went looking for a natural remedy. I also have anxiety and panic which is quite well controlled now, thanks in no small part to you and your summits 😉
I noticed right away that the urica (white mulberry) cleared up my gout and made me feel much calmer, so I thought it was the gout that must be making me anxious. I only just found this article when it occurred to me to check if white mulberry had an effect on anxiety. Gotta love Google 😉

What supplements do you recommend for pelvic floor dysfunction? I was diagnosed 2 years ago after I end an abusive relationship. Right before I left that relationship I suffered through several UTI and had 2 std’s due to his infidelity. Now I have anxiety issues. I also have hypothyroidism.
I have done physical therapy twice and been released. Since I don’t have a referral from doctor I can’t due physical therapy. But once a month I see a chiropractor and get a massage. What other recommendations do you have?

Jackie
Per this blog, figuring out if oxalates are an issue would be my first approach. And then depending on what the pelvic floor dysfunction issues are, I would address the possibility of low serotonin and/or low GABA – this would help with the anxiety too. The amino acids do work best when the thyroid is functioning well so this does need to be addressed too.

My colleague Jessica Drummond recently published this case study – Vulvodynia and Irritable Bowel Syndrome Treated With an Elimination Diet of https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4991650/ As you can see it’s a customized approach based on each person’s unique needs and deficiencies.

Hi Trudy,
I have just so much to say that I don’t know where to start!

Lets just say that I’ve lived with multiple allergies and sensitivities all my life, with little or no help from the medical profession. In my 50’s I was diagnosed as having Polyglandular Autoimmune Endocrinology/Hashimotos,…given carbimizole and told I wouldn’t live to 70. What a story I can tell! My 60’s were plagued with caring issues for my aged parents,…one with motor neurones,…so you will understand that thinking about myself was not possible.

After they passed away, my husband took me for a holiday, but 2 days into it, the hired car gears failed and we ended up at the bottom of a cliff. I broke a few bits which ‘mended’, but he broke his back…the beginning of a lot more trauma. Anyway, I’m sure you get the picture! I was presented with a problem after the accident where I found myself lifting my husband out of the bath, even though I had two broken ribs myself etc., but the end result was torn pelvic muscles/ligaments after which my uterus ‘fell out’.

After 3 years, I finally found a most brilliant and caring female surgeon who at my request, removed the uterus, (last Feb.)which, by the way, was full of adenomyosis, giving me a much more comfortable existence. That was 5 months ago. After the op., I was still left with some incontinence, for which they offered yet another op.,…so I decided to get some Julva. In 5 weeks of use, I have gone from toilet trips every 3 hours at night to every 5-6 hours. Yesterday I visited the surgeon again and she is over the moon. She wants me to use Julva for 12 months and then review again. She said she has asked a number of patients to ‘try it’, but so far, I’m the only one to do so,..and it was me who introduced her to it anyway.

The problem for Aust. women is the price. It works out about $50-60 per month with postage (which the ‘good’ Govt. has just increased by 10%) I’m a pensioner, and this is almost prohibitive. I want my almost menopausal daughter to go on it too, but price is stopping her. It is said to prevent or lesson hot flushes, and best of all, prevent the drying and thinning of the vagina, which is such a bonus at that age.

Trudy,…we NEED this product to be advertised as much as possible, and then we need someone to import it in bulk, so the postage is reduced. My Prof. surgeon is very open to the use of it, but her hands are tied,…as she said to me,….’we are made to live in a box’!…and I think we know exactly what she meant by that.

And yes, I know all about pain in the ankles and feet, and terrible leg cramps if I eat the ‘wrong’ thing! Contact me if you want more info. about Julva, doctor etc. Thank you for all your help.

Hi Judy
I too want to try Julva but can’t afford it.
An option I have looked at is getting DHEA tablets (DHEA is the active ingredient in Julva) and using them as pessaries (i.e. insert the tablet into the vagina)

I have read on forums that other people have tried this and it works for them.
Still a bit of a hurdle for those of us in Australia as the online supplement sellers won’t let you buy DHEA if you live in Australia .

If you know anyone in the US then you can get it sent to them and have them post it to you. It is legal to buy the DHEA if you have a doctors prescription for it. I’ve got as far as getting a script from my doctor, but haven’t yet sorted out a US address.

They cost approx AUS $8.32 for a 2 month supply (60 tablets) and the internal US shipping is free if you spend over US $20. You’d have to work out what the shipping from US to Aus would be, but one would hope you can get it for no more than the Julva shipping cost.